Friends and their ideas about how to fix CD

I tried to locate the post I read a week or two ago about people's input on our DD, but didn't locate it quickly.

There's a friend sending me information about Colonix, stuff that will purify my intestines by flushing out toxins and metals. Arrr... A little frustrated with folks telling me how to fix my crohn's. If only it was that simple. I have shown unyielding patience with my close friends who do this, as I know they are only trying to help... but Colonix! Yeah, that's what I need, triple my trips to the bathroom. As if being on a liquid diet for weeks at at time doesn't do the trick. I don't believe that there's much left to flush. The bloating is inflammation, not poo build up. Has anyone seen the info on that stuff? YUCK!

Okay. Done ranting. Feel much better now. I can go back over to her email and send a nice thanks but no thanks email reply.



-Leslie

I agree it is a balence inbetween appreciating their caring nature and their ignorance.

I also had a coworker try to convince me to do a colon cleanse. Apparently they don't realize how many colon cleanses we get a year. :)

I agree..people do have good intentions, they are just clueless when it comes to what we have. I really ticks me off when my husband who knows better asks me 'well, what did u eat?' like it always has to do with something i ate...i mean all these years and he still doesn't get it!! i could be on broth and jello and still hurt and he would insist that i cheated and ate something i "shouldn't have"....UHG!!! denial i guess. i think people, men especially, just want to be able to 'fix' it.
ok..sorry for the rant.
-jeny

Oh yes, everyone has thier "magic" cure suggestions. It can be frustrating, and even upsetting. People don't seem to get the seriousness of this disease, and if it was ever so easy, don't they think our doctors would have figured that out long before now?

My MIL is famous for this. She even mails me articles and coupons for things that would never help me. She'll even email me ideas of OTHER conditions it might be! Geesh.

The funny thing is..after having this for awhile and you hear of someone else with a disease you have never heard about before, it makes you want to go do more research on it and try to understand what the person is going threw. I guess by the end of your life everyone has had something that changes your life and how you perceive others.

When I lost access to Humira last month, I had several people say to me, "if you just think positively, you'll stay well, even though you're not on your medication anymore". Yeah, right. So the joint pain, the inability to tolerate much more than liquids, and the d to the point of incontinence, were all because I had negative thoughts. *sigh*

I'm sorry you have to deal with this, Leslie. It's frustrating.

Fitzy - the gut is improving, but still very delicate, and I'm still on liquid / soft foods. I'm also very weak and have very little stamina, and don't understand why. Thanks for asking!

Ha ha... had a similar experience about a week ago. There's an elderly woman that works in our office. She must be about 80. Anyway, she sells all these vitamins and herbal supplements in some sort of "Amway" type thing. She saw me limping along and asked what was wrong. "I have severe arthritis from my Crohn's disease right now." She perked up: "Oh, arthritis. We have a supplement for that." I refrained from rolling my eyes as best I could, and responded, "Thanks, but I have a lot of allergies and can't take many herbs and supplements." Again, she perks up: "Oh, allergies, we have a supplement for that too. You just need vitamins and minerals." At that point I started to get a bit perturbed and just walked (hobbled) away.

I looked right at her as I walked in normally today at work after just one Remicade infusion yesterday.
Pretty excited right now.

I suppose you can look at it as they care, but I also think if you really care you'll learn about what that person really has too. A lot of the suggestions I've gotten have been slaps in the face, as in Crohn's isn't all that serious. If you love me, care about me, and want to see me well, learn about my disease. I'd never tell someone how to treat anything to begin with, but especially something I'm just clueless about.

But then again I've had those same people that give me suggestions, also insist on eating in certain places, even after saying I can't. So sometimes I do have to wonder what their motive is for all their suggestions.

tsitodawg -

The pain (and nausea) medication part of your post I have run into as well. There is a large circle of friends that I have been loosely associated with on/off for over 20 years. Once word got out that I had CD, everyone knew, much to my dismay. The bad part was the girlfriend who broadcast this was at my house helping me on the day of one of my ER releases saw all my meds and then told everyone within this large group. After that several people turned their nose up at me like I was a drug addict. A couple did ask "What is crohn's and why do you have to take so much medication?"

I don't care what anyone thinks... so, I lightened my loose-friend load and now keep an inner circle of close friends. But nobody but this forum knows how bad I hurt, that some days I cannot walk or hold anything due to the swelling in all my joints, how nauseated and bloated how many trips to the bathroom.

?? Idea! The next time someone wants to get up into my medical business I do believe I will be evil and get them into a poo comparison conversation!! hehe We will see how many people are happy when their poo comes out lightly formed like soft cheetos or who shouts out whew hooo when they actually have a formed stool rather than mush! Yep, my friend who suggested the colonics will be the target for this one... known her since third grade, so she's not going anywhere... she'll just stop trying to tell me to change my diet. She's been suggesting stuff and telling me how to fix it for over a year now. Soooo poo talk it is! I'm not too evil, though, or I would just go over to her house and do the poo... then she would know what a CD poo is ALL about! I can clear an entire 1200 square foot house on any given day.

I told a hairdresser once that I had crohn's and she asked me if that was some kind of blood disorder, I told her no, it was more like a having to use the toilet often disorder and then I gave her more details of course....she was mystified that such a disease could even exsit, I told her I thought the same thing when I first started getting sick and then got DX with crohn's.

All we can do is share our knowledge to spread the word...in Canada, November is marked as IBD awareness month...in fact, my GI was on the local morning news show yeseterday putting the awareness out there.

:)

i dont really tell anyone bout my disease only my best friend and one of my boyfriends friends has crohns so i usually txt him when i get good news coz hes the only one who understands the xciment of remission and the dissapointment of being put back on pred,its kinda weird i have 3 ppl i knw who haf crohns my boyfriends friend,a girl frm my old highschool,and my boyfriends mum......sad that i knw so many,dse mke me giggle when my bfs mum comes over and she can spot when im on pred etc :)